We are back home. Actually, we've been home for a few days, but have been busy trying desperately to catch up again. Joerg's preparing for a class he's teaching at Indiana University next month, and I had big plans for our poor neglected landscape this Spring. Oh, well. So here's what happened:
We went to clinic, and Anni spiked a very high fever. So we were admitted, much to our surprise as Anni had given no sign of coming down with something. Her fever finally came down that night, but they decided to do a liver biopsy, as it didn't really look like she had a simple viral infection and rejection can cause fever. Amazingly, they scheduled it for 9 a.m. and actually stuck to the schedule, which meant that we had the results back by that afternoon. The biopsy still showed signs of rejection, but Dr. Emerick said that her liver actually looked much better than her lab numbers would have suggested. They decided to hit her with another round of high-dose IV steroids to try to finally get rid of the smoldering rejection. As you may remember from my updates during Anni's last round of mega-steroids, it is not much fun for her (or her parents, either). The steroids make it very difficult for her to sleep, give her nightmares, and generally send her into wild mood-swings, and most of the moods are not very pretty. Again, though, with both of us there with her she did pretty well.
The next day, they decided to do another CT to check on the status of her lymph nodes. This has been Anni's least favorite procedure because she has always had to get an NG-tube (the tube that goes into her nose down to her stomach) to get the contrast solution needed for a good picture. She just always stubbornly refused to drink the stuff. This time, she finally "got it" that if she would only drink it, even though she didn't like the taste, that she wouldn't have to get the tube. Hooray for finally developing the reasoning that allows her to choose the lesser of two evils! So she drank it all up, not without protest, of course, but she got it down. She was a little nervous about going downstairs to the CT suite, and kept announcing to all she passed that she was NOT
going to get a tube down her nose. In the end it all went well. The CT results were that there has been absolutely no change again. I think that the docs are beginning to think that maybe those silly lymph nodes are just going to be there, just hanging out in her abdomen. I'm not sure how closely we're going to have to monitor them.
They put Anni on pretty powerful IV antibiotics the very first night she was in the hospital. She had another fever the next morning, but after the third round of antibiotics, the fever went away, not to return for the rest of our hospital stay. We continued the antibiotics for 48 hours, and did 3 days of the steroids. After the last round of steroids, we headed home. Of course, the very next morning, Anni woke up with another high fever. Again, she didn't have a runny nose or diarrhea, or any other symptoms of being sick. Unexplained fevers really really freak me out. Especially when they come back soon after stopping antibiotics. If you remember, Anni had super bad terrible problems with many many bacterial infections before her first transplant. So anytime a high fever shows up without the usual accompanying symptoms, I get very nervous.
We called her docs in Chicago, but they decided to send her for labs before having her come back to Chicago. We took her to our local hospital, and had the blood drawn. We were only home a few hours when the docs in Chicago called back to tell us that her potassium was critically low (very low levels of potassium can cause heart problems). So she had to head into the ER to get a 4-hour infusion of IV potassium. No more fevers, and after she got the potassium she felt much
She seems to be back to normal now, although she has moments of true grouchiness (being on mega-steroids is hard, but I've been told that you feel absolutely awful when you come off them, too).
Frankie was none too happy about going to the hospital, interrupting her little routine that she's intent on developing. She expressed her displeasure by refusing to nurse, which was pretty uncomfortable for me, not to mention worrying me that something was wrong with her. However, as soon as we got back home, she was back to her usual voracious self. And she celebrated the return to her crib by sleeping through the night for the first time ever! That only lasted for one night, though...
Frankie has added to her repertoire of communicative skills. She now growls. A really really loud growl. She's turning into a pretty noisy baby, actually. I remember that my niece, Darcy, also growled quite a bit as a baby. However, it was pretty funny on Darcy because she had this really loud, menacing growl sound going on, but she was such a tiny, delicate, cute little baby. It's funny on Frankie, too, but in a baby that ate Manhattan kind of way. She is just so darn big.
Frankie has also discovered paper with a vengeance. We really have to watch closely that she doesn't snag some as she always always always tries to eat it. She now reaches for anything and everything within sight, and she has really good aim. I'm amazed at how easily she gets things. Her big sister also loved paper. My parents gave me a subscription to Newsweek around the time that Anni was born, and I remember joking with them about what a good present it was, as I read the magazine during my long, sleepless newborn nights to keep me awake while nursing. Then, as Anni got older, she enjoyed tearing the pages out of the magazine just as fast as I could read them. Rather than eating the pages, though, Anni liked to crumple them into little balls, which she let fall all over the floor. This, in turn, provided hours of entertainment for the cats. So the magazine was fun for all members of the household. Family recycling.
Well, this is already too long, so I'll call it quits. Just wanted to let you all know that we're back home...
Friday, May 7, 2004
Just a quick note to let you know that we are back in Chicago. We have no idea what is up. We came in for clinic on Thursday morning, expecting to be back home that night. Anni had other ideas, though, as she spiked a gigantic fever just as the doctor came in to examine her. So we were admitted, and they did a biopsy this morning (her labs continued to worsen this week). She has no signs of illness, though, so the fevers (she had another during the night) are completely a mystery. We'll let you all know what they find out. It could be an infection in her PICC line (her semi-permanent IV)... We should know something by tomorrow at least. OK, Frankie's upset, so I need to go. Enjoy your weekend!